I have to confess that for me, it's been an odd one. I've not really touched on this much because people who know me *in real life* read this. But, I have sometimes struggled with being a parent to a disabled child.
When Lyla was diagnosed with autism two and a half years ago, I was exhausted from dealing with her challenging behaviour and getting no sleep. Plus, I have a serious hereditary illness, which is progressing and I was (and am) getting more and more anaemic and tired.
The thought that this wasn't just an extended toddlerhood, but a condition where I may never get a reprieve nearly finished me off mentally. I'd been running on empty, assuming that things would pick up someday soon.
In the first days after the diagnosis, my first thought every morning were 'How am I going to get up and put up with the violence today and then start all over again tomorrow? This is too much. I'm miserable. I don't want to wake up anymore'.
This was quite a bleak time and I made the decision that if I was going to cope I would have to take antidepressants. I was under such unbearable stress, had no help and I thought this would probably be the only way I could cope.
Around this time, I also collapsed from a stomach ulcer and other stress-related illnesses, which I'm sure were related to the shock of coping.
So this was all way back in 2008.
I find it quite hard to convince people that I've suffered from depression- I think I'm one of the people that doctors call a 'happy depressive'- somebody who looks fine, has a smile on their face and does their best to carry on as normal, but inside is going quietly mental.
I carried on, tried my best to understand autism and find a way to help Lyla with her behaviour. Things improved and in early summer 2010, I decided to stop taking the tablets.
This wasn't as easy as I'd hoped: the autism hasn't gone away. And I had two years worth of pent-up grieving that'd been put on hold whilst I was in the coping-zone.
This had to come out, but eventually the tears stopped and I've started to appreciate what wonderful children I have.
I also came to a realisation that half the time I thought I was miserable, I was actually just exhausted- I needed to DO LESS.
But family-life and doing less doesn't happen on it's own- it has to be a conscious choice.
For autism mums particularly, there's a big pressure to 'help' your child and not just in conventional terms (like Social Stories, Pecs symbols, speech therapy exercises, OT exercises, medication, changing the way you speak to and teach your child, which professionals just expect you to do on top of everything else!) but a whole wealth of other therapies like intensive ABA which promise big improvements.
You really need a salaried staff to do all this, but most (actually, probably ALL) mums do it alone. The difficulty is that the more you do, the more you feel you ought to do. And this can become an exhausting vicious circle.
So, however hard this is, in 2011, I'll be giving myself a bit of time-out from autism.
I'll still be living happily with Lyla, but I need some time to myself, a bit of time to recover from the last seven years.
So how can you do less when you feel that just to do the things you DON'T want to do (laundry, taxiing kids, cooking, cleaning anyone?) there needs to be about five different versions of you buzzing around like worker-bees?
Well, these are some of the things I've started doing:
- Bought DVD box sets- cos I HAVE to sit down and watch them now, right?!
- Got out a pile of books that fascinate me from the library and put them next to a comfy-chair
- Booked in dates with friends to do something fun when I have days off rather than spend the time catching up with the laundry/ shopping/ cleaning/ interminable to-do list
- Joined a gym on a cheap off-peak deal, where I can spend a bit of time exercising, but much more importantly spend time SITTING about in their spa
- Allowing myself to sit down when I eat lunch, rather than eating on the run
- Have a slush-pile for autism correspondence, articles etc which sits there until I feel up to dealing with it
What do you plan to do in 2011 to keep body and soul together?
Thankyou for supporting the blog in 2010, Wishing you all a Very Happy New Year!!!